My Interviews for the Village Voice on the Orphans-in-Drug-Trials – Will The Mainstream Covers AIDS Critically? (29% of ICC Children Have Died)

I was contacted in January, 2009, by a young reporter for the Village Voice called Elizabeth Dwoskin, who asked me to help her investigate the ICC story, and provide sources for her investigation. She told me her interest was in helping the children affected by the drug studies. I offered help by email and telephone, by providing material and sources for her work.

At present, Columbia Presbyterian is holding patients’ medical records hostage. They will not release medical records, neither to any investigating body, nor to the young adults who were put through medical experiments under the auspices of Columbia/Presbyterian and the National Institutes of Health.

These children can’t get their own medical records. The question I hope you will be asking throughout is:

What can we do to get Columbia Presbyterian to release medical records to the ICC trial participants?

Who can we write, petition or legally pressure, so that young people who were used in studies, or their families (because at least 200 children died in and after the studies), can read their own medical records?

What follows is the end of my correspondence with the Village Voice reporter. In my dealings with the reporter, I was sought and entreated for leads and information, which I provided; subsequently, I was put on trial for ‘beliefs’ that were ascribed to me.

Furthermore, I was told repeatedly by the reporter that she ‘could not, and was not able to read or understand’ any of the medical or pharmaceutical text I sent to her.

Here’s hoping that some young reporters will get the message – it is necessary to be able to read the medical literature critically, to approach studies on drugs and testing, to brave examining journal studies and manufacturer labels on HIV tests and AIDS drugs, if one is going to be serious about understanding, let along reporting what is happening in the field.

Here’s hoping Ms. Dwoskin fights for the release of the records, and the rights of the hundreds of individuals who were used in human experiments.

Here’s hoping.

. . . . . .

What follows is the email exchange that occurred after the long telephone conversation with Ms. Dwoskin on 3/11/2009 that is referenced throughout.

One – Elizabeth Dwoskin to Liam Scheff – 3/11/2009

Thanks for the documents. Like many others, I am obviously motivated by concern for the kids. But it is difficult to talk to someone who attacks one’s motives and calls a person a parasite and referring to one using patronizing terminology, as a “young lady”. If you want to talk another time, I would, but only if you resist personally attacking me because you don’t like my questions. If it can be civil, we can talk, and perhaps get something accomplished.

I will, however, address your question in writing, since I can tell that you are concerned. As far as I know, no young people have yet made their requests in writing. They will have to make them to various institutions – not just one. The question of the cost of records cannot be addressed until the records are compiled (Like a FOIL request, a cost cannot be estimated until the documents have been put together), which cannot be done, until the requests are made. That is in process.

Thank you for your time on the phone. I wish you great success in helping the kids from the ICC get their medical records. This is a necessary step, and I hope you will fight for them.

Regarding your many questions about my personal philosophy or belief about Aids, again, I tried to provide you with answers; you seemed intent on deriving other answers from me than those that were my own. I found you to be extremely persistent and single minded in pursuing the answers you wanted to hear, I’m sorry but the responses you were looking for either aren’t in me, or aren’t relevant to helping these kids get their records.

To reiterate my philosophical concerns:

my concern is the diverse reactivity and lack of standardization of the HIV tests,

coupled with the severity of the drugs,

and the immense and immovable weight of the diagnosis that stems from the testing procedure, which is, according to the standard medical literature on testing, fraught with controversy and error.

To me, this seems to predispose doctors, and the general public, to look at too many of these children as ‘already dead,’ all based on a test result, and therefore becoming insensitive to the responses of the children to the drugs, the FDA Black Box labeled drugs given in high dose and combination, to be specific.

On my activist position:

I believe in informed consent, above all. I believe that all details of a medical procedure or of a drug protocol should be made available in detail to anyone about to undergo it; this includes all supportive and all critical medical literature relevant to the protocol or drug, as well as relevant social journal or periodical literature, where a drug or procedure is controversial.

If you have any further questions, please provide them in an email, and I’ll type my responses.

Liam Scheff

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Three – Elizabeth Dwoskin to Liam Scheff – 3/11/2009

I see that your overarching concern is related to the rates of inaccuracy and lack of standardization of HIV tests. Fraught with controversy and error as they may be, I still don’t understand whether you have found, through your research, if they can ever be right.

And another thing. Since I do care about the kids, I must know, whether you believe that the diagnosis could have been correct for some of them? Or were they all subject wastefully to harsh and toxic drugs, in your opinion?

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Four – Liam Scheff to Tony Ortega and Elizabeth Dwoskin – 3/11/2009

Two questions, on the same tack, I’ll answer as follows:

Please read the papers I’ve found and compiled on HIV testing, and interpretation. Here

Testing is very much an ‘art’ and not a science.

I believe the tests, based on what the med. lit. says, over and over, are diagnosing many events, illnesses, non-illness (pregnancy for example). But you’ll have to comb through the articles (not mine, but theirs, which are linked within), to know how it goes.

So, when they say, over and over again that they have no gold standard, well, I take them at their word:

In 1987, the New England Journal of Medicine stated that “The meaning of positive tests will depend on the joint [ELISA/WB] false positive rate. Because we lack a gold standard, we do not know what that rate is now. We cannot know what it will be in a large-scale screening program.” (Screening for HIV: can we afford the false positive rate?. NEJM. 1987)

Skip ahead to 1996; JAMA again reported: “the diagnosis of HIV infection in infants is particularly difficult because there is no reference or ‘gold standard’ test that determines unequivocally the true infection status of the patient. (JAMA. May, 1996)

In 1997, Abbott laboratories, the world leader in HIV test production stated: “At present there is no recognized standard for establishing the presence or absence of HIV antibody in human blood.” (Abbot Laboratories HIV Elisa Test 1997 [reiterated in 2006])

In 2000 the Journal AIDS reported that “2.9% to 12.3%” of women in a study tested positive, “depending on the test used,” but “since there is no established gold standard test, it is unclear which of these two proportions is the best estimate of the real prevalence rate…” (AIDS, 14; 2000).

When they report, over and over again, that people in some groups shouldn’t be tested (because they’ll be ‘false positives’, I take them at their word:

“Counseling people at low risk requires paying particular attention to false positives, that is, to the possibility that the client has a positive HIV test even though he or she is not infected with the virus.…If clients are not informed about this fact, they tend to believe that a positive test means that they are infected with absolute certainty….Emotional pain and lives can be saved if counselors inform the clients about the possibility of false positives…” (“AIDS Counseling for Low-Risk Clients”; Max Plank Institute/Aids Care, 10, 1998 )

Or that we really shouldn’t be giving these tests to pregnant women, well I believe them:

High False-positive Rate of Human Immunodeficiency Virus Rapid Serum Screening in a Predominantly Hispanic Prenatal Population

A total of 69 patients had a positive rapid HIV-ELISA out of 9,781 deliveries. Of those, 26 were confirmed as HIV infected by Western blot (overall HIV prevalence: 0.27%, ELISA-positive predictive value: 37.7%).

The subgroup prevalence of HIV and positive predictive value of ELISA were 1.53 and 75% among Caucasians; 2.43 and 82.6% among African- Americans; and 0.05 and 9.8% among Hispanics, respectively (p <0.05 for the comparisons between Hispanics and non-Hispanics only). A history of multiple (Z5 lifetime) sexual partners was elicited in the majority of HIV-infected patients.

So, the presumed accuracy of the test varies, from group to group – Black to Hispanic to White.

The ‘predictive value’ here is rated at 75% for whites, 82.6% for Blacks, but only 9.8% for Hispanics.

That’s some test.

You can find the same being said of whites, that their PPV (test accuracy) is almost zero, but that for ‘at risk’ people in poor countries, it doesn’t matter, b/c they ‘have the disease anyway.’

“[The test’s] error rate won’t matter much in areas with a high prevalence of HIV, because in all probability the people testing false-positive will have the disease. But if the same test was performed on 1,000 white, affluent suburban housewives – a low-prevalence population – in all likelihood all positive results will be false, and positive predictive values plummet to zero.” (Coming to your clinic: Candidates for rapid tests, Aids Alert – March 1998)

So, at present, I have more questions than answers. I do think we should go very slowly and cautiously in assuming that we have the right to tell anybody who has a reactive test that “they’re going to die, no matter what,” and therefore must start on an irreversible course of extremely toxic drugging, for perpetuity – all based on these tests.

I advise caution.

As for the drugs, your second question, I’m not really in favor of using high dose FDA Black Box labeled drugs on orphans.

It’s not a very complicated point of view. Just my feeling about what we, as a society, should be doing to wards of the state, in reference to medical experiments with FDA Black Box labeled drugs. But you’d have to look up all the drugs that were used, and report the known toxicities to know why they got the Black Box.

PS – in my opinion, as you say, Columbia Presbyterian should have opened up the medical records a long time ago on this story.

I wonder what they’re hiding? What will the records of children drugged round the clock with Black Box labeled drugs show? I wonder if you’ve had a response from them? Or, have you asked them about their ‘beliefs’ about HIV testing?

We all know that a lot of children died in and after those trials. Maybe that should be the focus of a legal investigation, one with actual penalties. You know? Maybe that matters more than my philosophy of testing.

How about we all agree that releasing the medical records of these many hundred orphans used in medical experiments would elucidate how the drugs ACTUALLY affected the children.

Certainly the nurses and childcare workers, and children, have been clear about the effects: diarrhea, vomiting, cancers, strange lumps needing surgery to be removed; all these absolutely consistent with what’s known about Aids drugs.

Have a look through the trenches at thebody.com – – here adult gay men tell what they suffer on the drugs.

I’ve responded in full and in brief, in referenced letters on the tests, drugs, and toxicities.

Your response ignores this material, material which you requested, and goes to defend the hospital for refusing to make any records available to any investigating body, including their own hired VERA institute.

Can we all acknowledge the absolute lack of any legal pressure applied to the hospital that carried out these studies? Where is the District Attorney? Where are the court cases?

They aren’t arising; the hospital won’t deliver its study records EVEN TO PARTICIPANTS. That should tell you more than something.

The records:

They can release ’em to the patients, and the patients can talk to the press.

They can certainly release them to a grand jury, censoring all first and last names of patients. But, right, no jury has been called. It’s all been sidelined through PR maneuvering.

What is the VERA institute? A legal body? No, its function here has been that of a PR firm; they put out an absolution so that nobody ever gets to find out.

Meanwhile a young man who we both know, who was used as a lab animal, can’t get his own medical history without being told he has to pay several thousand dollars or more for it, and will need a lawyer.

Maybe the focus should be on helping them, and on getting Col/Pres. to face the music.

Just for the record, and to be clear, in case anyone was confused by the conversation this AM; I have been supplying info and sources to Ms. Dwoskin since January. She’s asked me relentlessly to help her do her work, supply her with resources, and people, and I have.

I have also encouraged her to ‘get out there and beat the bushes,’ and though it took a little while, I think she has.

So, when Ms. Dwoskin fired an endless series of questions to me this AM, about my personal philosophy of Aids, I referred her back to the actual published medical material on HIV tests, Aids drugs, the studies, etc. I then put it to her to focus on the studies, and helping the ICC kids get a hold of them.

When she fought gamely against examining even a single study on HIV tests, and continued to barrage me with questions about my “beliefs” about Aids, seeking again and again to put words or statements into my mouth, or to assign them to me, (”so you’re saying… so you’re saying..” “No,” I responded, over and over, and said again and again what I sent in the previous emails); when she put it to me to to respond to vague, unnamed or incorrectly sourced allegations about me, (written by bloggers and pro-pharma activists), I did indeed inform her that she was far off course, wasting my time and hers, in no uncertain and unflattering terms.

It didn’t matter how many times I explained my actual interest to her – the unstable nature of the tests, the overly toxic drugs and the children to whom they were applied so mercilessly. She continued to press on and on for… something. I’m not sure what it was, but if I see it in your paper, assigned to me, well, I could make vague threats, but nobody sues for libel. So, here’s hoping the editors have a better grasp on ethics than Ms. Dwoskin.

If you do manage to libel me, or to assign to me beliefs or intentions that are not my own, I will certainly write you for a correction. What can a man do these days? I don’t run a paper; my research is out there in the public sphere. This young woman barely needed to contact me. But she has, and she’s made a plea to me to help her. Up to today, that was the case; but then she informed me that that she was in no way my “ally” in this story; the personal questions came and came again, and the reality of children being used in government clinical trials, with FDA Black Boxed drugs was abandoned.
I didn’t realize I was to be the subject of a Village Voice biography. I hope some of it is true.

I certainly hope that she will do right by the kids she is now in contact with, and do what she can to help them, as difficult as it is to do so, when no one wants to talk about this bloody issue in detail, as is evidenced by these many attempts to get your reporter to examine the means by which these children were entered into clinical trials.

I think she might care about these children and young adults, and I hope that guides her. It’s easy to care, it’s hard to do the deeper research. Whenever I have presented anything remotely technical or rigorous, I have been met by the same stupefying response when we’ve spoken on the phone: “I am not a scientist so I just can’t read this, can’t understand this, I can’t look at this.”

I could provide you with the length of our correspondence, but it would be boring, and you wouldn’t read it. Suffice it to say, when I go so far as to provide material and sources to a reporter pleading with me to help her do her story, I expect, perhaps foolishly, a little more than a hostile inquiry about the pharmaceutical lobby and their ability to front a massive PR attack in return.

Please submit any further questions by email, and please do continue to try to get these records, at least for the one young man who we both know. I will remain on that assignment.

Kind regards,

Liam Scheff

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Eight – From Elizabeth Dwoskin to Liam Scheff – 3/11/2009

You’ve referred to me as a young lady and a young woman.

How old are you?

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Nine – Liam Scheff to Tony Ortega and Elizabeth Dwoskin – 3/11/2009

This is what I’m dealing with. This was much of the telephone interview. This is the attention to detail offered by Ms. Dwoskin thus far in covering Aids.

Where is the focus on the studies? On the drugs? On the tests? This is what I’ve been pointing out, and frankly begging for, for years now.

I write a thorough, fair, and quite open letter about my experience with this reporter and her process, and enter a plea to focus on the details of the story, but it’s all for nothing. How old am I? That’s the question.

I’m nearly 40; many people are young compared with myself. I enjoyed being a young man; I knew when I was one, I am not one anymore.

LS

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Ten – Liam Scheff to Tony Ortega, Elizabeth Dwoskin – 3/12/2009

Subject: No reply from the Village Voice, no option but to make correspondence public.

I have received no reply to any of my concerns, either that I be represented in my own words, or that the material I provided was ever looked at and examined.

If I am not to get a fair hearing in your paper, then I’ll have to make that clear ahead of time.

Liam Scheff

Eleven – Tony Ortega to Liam Scheff – 3/12/2009

Mr. Scheff,

I have been reading the e-mails that you’ve been sending in response to Ms. Dwoskin’s questions, and I know she is considering very carefully the material you have sent.

She is in the process of researching a complex and length story, which has yet to be published.

Until it is, there’s little point in responding to your questions about how the story is being put together.

Sincerely,

Tony Ortega
Editor
The Village Voice

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Twelve – Liam Scheff to Tony Ortega, Elizabeth Dwoskin – 3/12/2009

Hello Tony,

thank you for your response.

Your reporter approached me in late January, asking, pleading and begging for help, for leads, for information. She offered to ‘get together’ in New York if I was ever in town. She called and wrote and asked for more and more information, leads, connections.

She’s not functioning as a reporter. She’s been an able opportunist, seeking to tell some story, I’m not sure which one.

She enlisted me as a co-conspirator, as it were, in getting to the children, for the purposes, she assured me, of helping them, of telling their story; I offered to help because I was willing to believe that she might want to be of service to these kids.

When she informed me yesterday that her focus, at least with me, was to create a biography about me, I told her that I didn’t see the point. The drug trials occurred, children died in and following the trials. The medical records are being held prisoner by Columbia Presbyterian. But, this young reporter wanted to talk about, as I wrote yesterday, unsourced name-calling, aimed at me, arising on a few pro-pharma blogs.

Your reporter profoundly misrepresented her intentions to me, in that case, and I would very much like to know how I am being quoted, and about what. If there are outlying questions that Ms. Dwoskin would like to pose for her story, she should submit them to me via email. I answered every one of her questions on the telephone; she was just hoping for different answers than those I gave. If her assertions end up in print over my actual thoughts, I will look into action against your paper. That may not seem like much of a threat, but it’s a genuine one.

regards,

Liam Scheff

. . . . . .

I will update this as it goes along. I hope Ms. Dwoskin will do good service in helping the kids and young adults from the ICC get their medical records, which are now being held prisoner by Columbia Presbyterian.

What can we do to get Columbia Presbyterian to release medical records to the ICC trial participants?

I have sent more information to Ms. Dwoskin of the Village Voice, who claims to be investigating the ICC orphans who were used in NIH clinical trials. I have sent her referenced information from the Aids medical literature on Viral Load, T-Cells, tests, drugs, etc. I have sent her information that she requested, though it is plainly available through a websearch, such as the ICC orphanage’s clinical trial information.

Here is what she assures me is a close to final letter, as the story is nearing completion.

Her questions are in bold, my answers are beneath. From an email dated today, March 16, 2009.

Elizabeth Dwoskin: 1) I have asked a number of experts as to whether HIV/AIDs drug clinical trials have ever been determined to cause a fatality. Though every researcher said it was possible, each researcher, including governmental sources, have told me that they do not know of a documented fatality due to a trial. If you know of a documented fatality (as you mention in your articles), can you provide me documentation of this?

It’s for them to provide medical records, not opinions.

And do you mean ever? Do you mean has there ever been a fatality in an AIDS drug trial?

Is that a joke? Look it up. How about for an AIDS drug in regular use? Ever a fatality?

I sent you links to copious referenced citations on Aids drugs. Please feel free to look therein.

Or, why do all of these drugs have the FDA’s Black Box label? That’s a good place to start.

2)You wrote in your first article that two kids had strokes and then later died due to drug toxicities. How do you know that this was due to drugs? Were you able to obtain documents showing it? (As you know, the Vera report did not find hard evidence of drug-related fatalities. If you have evidence to the contrary, I would like to see it so that I can provide evidence accordingly).

It is for those who put children into these trials to provide medical records. I knew some of the children; In the ICC, I saw many others, and was told in detail their stories, by Mimi, Mona, and the women who worked at the ICC. The ones who got sick faster, according to the childcare workers, and nurses I interviewed, were those with the tubes surgically implanted for adherence (forced drugging).

Ashley was brought in for non-compliance, not illness, got a tube, was drugged, went home with the tube, was drugged continuously, and died.

Arial was non-compliant, not terribly ill, got a tube, I believe had a stroke, and died.

Shyanne was not sick, was non-compliant (did not take the drugs or like them), was therefore brought into the ICC, was given a stomach tube, had a stroke, went blind, died.

You seem to think I can produce medical records when the city of NYC and Columbia Presbyterian won’t. It seems you’re putting the burden of proof for supplying medical records on me, rather than on the agency which has the records, and records the deaths.

They admit to over a hundred deaths, closer to 150, that is, 80, then 29 percent of the remaining 450 or so children, after the trials, while in foster care. And you want to make me the record keeper for all of them? These kids died, they died while on drugs, they died after being drugged. The VERA institute looked at zero medical records. You either want the children to have them, or you don’t. You either count their permanent absence as a sign of non-compliance with an investigation, or you just let it slide. But who would do that?

3) You interviewed Katherine Painter in ’03, and she said that trials were occurring at that time. ICC reports that trials stopped occurring in ’02. So here is a discrepancy I’m trying to resolve. At your last count, when did trials stop occurring there? What is your sourcing on that?

You already know the source – Dr. Katherine Painter, medical director of ICC; and the NIH database. They were advertising trials that listed ICC as a participating center into 2004 or 2005. I don’t have the city and state’s, and Col/Pres’s detailed record-keeping…Oh, wait. Nobody does. They WON’T RELEASE THEIR RECORDS.

4) While the story is not a biography, and the focus is on the children who were in trials, it is relevant to explain some aspects of your background as the person that broke the ICC story. Plus I’d like to make sure my facts are straight. You mentioned you are under 40 and from Boston. How old are you exactly, so that I may identify you? You mentioned that your parents were doctors. What kind of doctors? Did your parents direct you towards researching HIV? How long have you lived in Boston? Do you earn a living through your writing, or is this research a hobby? Also, can you send me some of your earlier articles, one that you wrote in the nineties?

Relevance? I’ll write my bio someday, and send you a copy.

5) I have not been able to find Mona. A number of people have told me that she is not real. I’d very much like to interview her to confirm things she told you and others, and to be able to use her story in my own. Can you put me in touch with her? I must ask her if she was ever officially charged with medical neglect.

Which is it, Elizabeth, she’s not real, or you want to know if she was charged with medical neglect?

I’ve cc’d this to a list of people who have worked with, interviewed, or tried to help Mona to get her boy and girl (nephew and niece) out of the ICC or other hospitals, mandated by ACS for adherence to AZT, Nevirapine, Kaletra, etc.

I sent you most of these names in the beginning of your ‘investigation’, so you could follow your own leads, and make your own impression. If you haven’t gotten even as far as talking with these folks, who have lived and breathed this story in NYC, I don’t know what to do for you.

6) I read your interaction with the Vera Institute on your website. What materials did Vera not enable you to give them?

I think I detail all of that pretty well in the letters, and in the radio interview with WBAI.

7) You told me that Christine Maggiore was not the person who told you about ICC. But, in article you wrote for the New York Press, you specifically state that Maggiore put you in touch with Mona. Which account do you stand by?

Thank you.

Best,

Elizabeth

I told you your question was not relevant to what was and is happening to children in New York City. Are you writing an article about children in NYC who were put into drug trials?

Or…

The answer is, Maggiore was, when she was alive, someone who mothers who were being prosecuted by the state [ed. persecuted, not prosecuted] called for advice. Mona was one such a mother. Maggiore passed on a tip to me. I looked into it, talked with Mona, who was worried about her children being on high dose Black Box label drugs. I looked up the orphanage where these children were being kept. The orphange’s website advertised plainly and boldly, that they were using their wards in clinical trials with AZT and Nevirapine, and other FDA Black-Box label drugs. A search of the NIH database (clinicaltrials.gov), cross-referenced with the orphanage confirmed that they, under the auspices of Columbia Presbyterian were conducting pharmaceutical company- and government-sponsored drug trials on their wards.

You can find the details of the trials in the studies. I have emailed you the list of studies, performed on newborns to young adults, both HIV “pos” and “indeterminate,” as well as “seronegative.”

It seems pretty clear that the actual drugs used, and the nature of the actual trials is far less interesting to you than the drama you can whip up around the person who first looked at the trials, and said, “You’re using orphans in pharma-sponsored drug trials, with high-dose, very toxic drugs. That doesn’t seem right.”

That was me. I’ll take the blame for pointing a finger at the practice of using wards of the state as human guinea pigs. That’s my ‘fault,’ I suppose. You got me.

6 Comments

Could you recapitulate succinctly what my position on the material is, in your estimation? I have yet to see any follow-up questions from you on the topics relating to any of the specific studies or drugs carried on in children at the ICC.

Following up from your last email, what I’m getting from your questions is approximately: “200 dead children, Liam Scheff to blame.”

This study, for example, would be a tremendous one for your paper to investigate:

A Study of the Safety and Effectiveness of Treating Advanced AIDS Patients Between Ages 4 and 22 With 7 Drugs, Some at Higher Than Usual Doses

This study is ongoing, but not recruiting participants.

Seven Black Box labeled drugs, at higher than normal doses, starting in 4 year olds. You’ll note in the text that the drugs were knocked down from Eight, because of ‘fatality’ due to pancreatitis in another study:

[AS PER AMENDMENT 01/07/00: Pancreatitis, which may be fatal in some cases, has occurred during therapy with ddI. The risk of pancreatitis may be increased when ddI is used in combination with HU. ACTG A5025, a study that had a d4T/ddI/HU arm, was terminated because of significant toxicity concerns related to the HU-containing arm. Patients enrolled in ACTG P1007 may be at increased risk of developing pancreatitis given their advanced disease state and the use of multiple drugs including HU. The study had been amended to address these concerns.] [AS PER AMENDMENT 12/19/01: HU has been removed from the drug regimen.]

Patient enrollment is staged to allow study physicians to aggressively monitor patients for signs of toxicity. Initially, patients are admitted to a hospital or clinical research center for 2 weeks, where they initiate an [AS PER AMENDMENT 12/19/01: “8-drug regimen” is replaced by “7-drug regimen”]

Nevertheless, they warn that children in this study “may be at increased risk of developing pancreatitis” due to the drugs. Well, I guess they warned them, huh?

A Phase I Study to Evaluate the Safety and Immunogenicity of Recombinant HIV-1 Envelope Antigen in Children Born to HIV-Infected Mothers
This study is ongoing, but not recruiting participants.

PRIMARY: To determine the safety of envelope recombinant proteins rgp120/HIV-1MN (Genentech) and rgp120/HIV-1SF2 (Chiron/Biocine) in infants who are of indeterminate HIV status born to HIV-infected women. To evaluate changes in viral load in infants proven to be infected and absolute CD4 counts in all immunized infants. SECONDARY: To evaluate the immunogenicity of these envelope recombinant proteins in infants of indeterminate HIV status born to HIV-infected women.

So, they want to test an experimental vaccine on “seronegative” infants. What could go wrong? What’s the ethical concern there?

Well, it’s a violation of every medical code since WW2, for example, but they just bulldoze right through. Do we have the records from these studies?

The purpose of this study is to see how beginning or changing anti-HIV medications affects the body composition (weight, height, growth, body fat, and muscle mass, or fat and muscle distribution) of HIV-infected children.

Now, the thing about a lot of the drugs, is that they cause severe changes in the composition of the body, in just these areas – muscle wasting, fat degeneration and accumulation in humps, and suppression of bone marrow, cell production, etc.

You can do a search for lipodystrophy, buffalo hump, protease inhibitors to see some articles and images.

I went at the beginning, and then after that I didn’t go. I take care of myself now, but I kind of block some of the time out, so I cannot pinpoint if I used to go all the time. Then I moved to New York. When I was there I saw a doctor for a little bit, but that was it.

– Damaries Cruz

When did you start treatment?

Actually, I’m not on treatment.
You never took treatment?

No.
Wow.

“For me, personally, it’s important to be public about living with HIV because it’s part of my healing. That’s what helps me to keep going: knowing that someone, hopefully, is listening and won’t get infected.”

I don’t take medications. I was diagnosed with AIDS two years ago because my T cells went down. They came back up. I never took a medication, I never had a symptom. I do holistic things.

Huh. She managed to do it w/o the life-saving, sometimes-fatality-inducing (That’s what the Black Box is for) drugs. Perhaps we should tread more lightly on enforcing a harsh-drug-regimen-for-perpetuity as though it were the ONLY solution, and instead broaden our view?

Selenium is now see to suppress Viral Load, for example, and, as I’ve sent you previously, Viral Load does not correlate well or at all with health or TCell levels.

It’s a complex field. I think we should be viewing it complexly. I think the mainstream and its critics should seek to find common ground in reducing the burden placed on patients, in terms of the severity of the drugs, and the severity of the diagnosis.

Sounds like she’s got a lot of fear-I read throught the 12 or so backs and forths.

It sounds to me that fear has made her utility lower than it was initially…despite your time educating her.

Is she the same one who terminated that interview with you in that “public place?”

I mentioned last night, in my letter to Jeffrey Crowley, Obama’s new AIDS coordinator, the ICC story, and sent him some links. I’m awaiting his response (like Gadot). Gates gave me the brush-off after my 3rd round with them. Who’s next? I keep em comin out to somebody new each day. Sort of a promise I’m keeping with myself and with someone I loved and miss very much.

Well, I hope she sticks with the story. I hope I can update this in a couple weeks, and say, ‘that brave young woman really came through, she really went to bat for these kids, and is getting things done.’

For my part, I’m sending Elizabeth Dwoskin heaps of positive energy in the hopes that she can stand up to the pressures of peers and editors, which I know must be HUGE. That aids cover-up is so entrenched that whoever is going to blow the lid off it will be a candidate for Pulitzer.

Hold on, girl, and get those facts!

… and about testing kids with aids drugs such as nevirapine, look at this article where the researchers “forgot” to report several deaths in a trial that was held in Africa.

“An audit of the Uganda research showed that 14 deaths were not reported in the study database as of early 2002 and that the top two researchers in Uganda acknowledged “thousands” of bad reactions weren’t disclosed.”

The situation there must have been comparable to that at Incarnation – substantial lack of oversight and accountability.

It appears to me that she is going to report the story as a 3rd person’s account- “your experiences” and the “children’s experiences” through her words. Well, the focus is going to on the “players” and not so much on the topic. Be prepared to hear “Gossip about ICC/ Columbia/ NIH and Liam Scheff et al.” in the Village Voice.

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Philosophy

Before there is anything and beneath everything - is mystery. As soon as you name it, you lose it. As soon as you define it, it disappears. The reality: we can't know the eternal; we can only live in a system of the gentlest ethics: Be kind to others, try to do no harm to people and the world.